Life after Traumatic Brain Injury

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It was a catch-22: If you didn’t put the trauma behind you, you couldn’t move on. But if you did put the trauma behind you, you willingly gave up your claim to the person you were before it happened.”
― Jodi Picoult

Two days ago on January 24th I put on some roller skates and skated in circles for about an hour. ‘Big deal, so what’ I hear some of you say. Yes, on paper it’s not a huge thing, it’s not even really a slightly large thing. I realise how insignificant it sounds to my own ears but in the timeline of my trauma and brain injury it’s MASSIVE!

It’s as massive as 4 weeks ago when I pushed the vacuum cleaner around the living room and cried because it’s the first time I’d done it since injury, it’s as huge as when I put the kettle on and made a cup of tea without having a panic attack. This is the reality of trauma, this is my reality. This is how much brain injury set me back, I was on factory reset. I can write it over and over and still never adequately express how the minutiae of life became massive and scary and hills to be climbed. I’m aware of people ‘worse off’ than me, I know this, it doesn’t help being told there are people ‘worse off’ than me because trauma is personal, my pain is mine and my mountains are only mountains to me. It’s the same for each individual, our experiences and struggles are very unique but they are massive and scary and exhilarating.

Strapping on roller skates and moving in circles on wheels was my particular Everest, those skates were blamed for my injury, they were the cause of my pain, my standing still, my loss. Something I loved became the thing that hurt me deeply and permanently. So yes you tutters and eye rollers putting those things back on my feet was kind of a BIG DEAL.

I’d planned the outing before the festive period, there were only a few people in the know in case I backed out, a date was set and with the help of Mr Braingirl and a lovely friend D from Belfast Roller Derby it became my goal for January. In the run up to it I’d had a birthday and another lovely relapse with through the roof anxiety and sadness, it was looking like I wouldn’t make it out the door. On the morning of the skate I was shaking like a leaf, my reptilian part of the brain was doing its best to keep me ‘safe’ at home. It ran through my body from head to toe scanning for any aches and pains it could find and warning me that they all meant certain doom. This time though I observed the thoughts and thanked it and told it not to be so suffocating and that I was perfectly safe.

We arrived at the rink (that was freezing cold!), I took a deep breath, got ready and went for it.

Me on skates!

I’m glad I did it, it felt great to banish that particular demon and add another penny in the ‘it didn’t kill me’ pot. I couldn’t do it for very long because I got too tired and I ached the next day but it’s crossed off the list and has given me a boost to see what I can tackle next.

I write this today on the back end of a fast month and an even faster weekend.

Yesterday was my 18 month post op anniversary, I had secretly imposed on myself some time ago that 18 months would be my cut off point, my end of the line. I wanted to start moving forward by this point. It could have backfired in the sense that if nothing changed I would feel terrible. I was just sick of feeling crap and thought a deadline might give me a kick up the bum.

About 3 weeks ago I was feeling awful, the usual complaints, feeling low, scared, tired, stuck and fed up. I had a trip back home to England planned and was worried about my resilience but also about the flight over. I’m not a natural flyer, I hate it. So add that on top of everything and I wasn’t doing too well. To cut a story short, I got on the plane, had two lovely weeks with family and had a bit of an adventure on the way home. Whilst in England the first few days were hard, I was sad and lost and cried a lot. Slowly though things began to shift, I began staying up past 6pm, I started to appreciate nature again, I smiled occasionally and found it easier to get out of bed in the morning.

I caught the lurgy whilst away and it blocked my head up, this minor thing would have had me on the ceiling in the past but I was dealing with it, it didn’t bother me at all. It was a nice feeling to not be permanently petrified. “I could get used to this” I thought. The good work continued whilst back at home – 9pm bedtimes, a feeling of lightness, of freedom, hope, productivity, yes even laughter.

I also got discharged from Psychology which was so liberating. I will miss Dr L he was fabulous.

I was feeling brave enough to face demons.

Since my injury (which I acquired skating if you remember) I’ve refused to even look at my skating gear. The skates, helmet and pads have been hidden away. The mere thought of wearing them again was enough to make me retreat back into my safe place. The trauma and difficult feelings brought up was just too much. Then I saw that there was a Roller Derby Tournament happening on the day of my anniversary in THE place where I sustained my injury. So,I bought a ticket and decided to go (it helped that it was the lovely Belfast Roller Derby hosting and playing, it meant there would be some familiar faces).

I have to say, I enjoyed myself. I had a brief wobble initially as I saw the exact spot where it happened but I sat through it and got on with watching the game. There are many feelings brought up by roller derby, the fact that I didn’t get to bow out on my own terms is frustrating, the people that were once so close but have fallen away, the longing to be doing something I really loved but not being able to and the fear it held because I somehow blamed it for what’s happened to me.

I have an urge to get the old skates out again I’ll never play full contact again but a wee whizz around a hall would be wonderful. I have now made peace with the fact that as far as that chapter of my life is concerned I will always be a spectator, in my tshirt, shouting at the track.

This is is not to say I’m 100% better yet! there’ll still be sad/angry/scared days but I KNOW they pass, I KNOW they don’t kill me and I KNOW I am strong enough to make them part of my story.

Ps. BIG love and thanks to Belfast Roller Derby who despite only knowing me for a short time before the injury made me feel so loved yesterday. It lifted me so much, I felt less alone and you filled me with hope. So thank you.

WARNING: The first set of photos on here will be post surgery, whilst not particularly gruesome they may not be your cup of tea or be a potential trigger. So please do just scroll past if you need to. The rest of the pictures will be safe.

The 1st of October didn’t exist last year, I was unconscious, I could have been floating about in space for all I knew. The next 3 or 4 days also didn’t exist. So whilst everyone else was rushing around, not sleeping and worrying, I was blissfully unaware of everything. Maybe that’s the best way. It does mean however that I have a bit of a memory gap. But anyhow, for an idea of how mad this all was here’s a few piccies of the first week (look away now if you need to).

This was after various tubes had been removed. What a scar eh?

So as you can imagine when I woke up from my extended sleep I was pretty surprised to find myself in hospital. I had no idea why I was there or for how long I had been there.

About 9 days later I was released (after much grumbling by me about the food and getting needles stuck in me all the time) and it was at this point I began thinking I was nearly better and that all I needed was a few nights sleep, even though I was clearly very poorly.

Anyway, this thinking continued for about 7 months, I attempted to go back to work, I attempted nights out and generally thought that all was right with my world.

Then came the stage you have all read about, denial slipped away and I was bereft. I began to face what has been the hardest thing I have ever had to deal with in my life. EVER. You all know this story by now but it was something I was not prepared for. If there’s one thing I would advise out of all of this it’s about being prepared for the psychological impact of trauma. It is a killer. I have had days where I just wanted to curl up and die because it was too painful to bear but hopefully this is something I don’t have to deal with so much anymore. I do worry about the impact of another trauma arriving on the back of this, I’m not sure if I’m strong enough yet to process anything else so I’m crossing fingers for a smooth ride for a while.

Anyhow, back to the point of this post. Moving on, acceptance, closure whatever you want to call it. My aim for the anniversary of my injury yesterday was to stick a pin in it, to use it as a marker for something new. People who have suffered TBI often talk about being ‘reborn’, I understand this a little now.

Mr Braingirl took the day off work and after a potentially triggering hospital visit in the morning (which is a WHOLE other story) we set about merging the past year with a new reality.

After reading lots about grief and recovery I decided to do a few symbolic acts that whilst on the surface may seem a bit trivial and silly, they represented the old me, the wonky brain and a commitment to reclaiming my life. The past year was hijacked by this injury, it stole my life, it stole my joy, it stole me.

One thing I did was to get things that represented the accident and my life before it and burn them.

These were things to do with Roller Derby, things to do with being sick like get well cards. Don’t get me wrong I don’t dislike roller derby now, I burnt these things with love but I needed to create a healthier relationship with what once was my saviour and had now become something I was very afraid of and at one point hated.

Then we got a chocolate cake and stuck some candles in to celebrate a new ‘birthday’.

These small acts, so simple and easy, lifted what had become the third wheel in our life, the passenger we carried whether we wanted to or not. I’m not suggesting life is ever going to be the same or that I’m completely better but I’m getting there and that’s enough for now. The TBI will always be there, I’ll always bear the battle scar but it’s no longer the engulfing shadow it was, instead of blocking my way down the road it will silently tip toe beside me.

Groovy Bruce the rabbit is a welcome and much cherished addition to our little family. He has been great therapy, It gave me something that I HAD to get up for every day. Here he is getting a cuddle.

I would recommend doing a ritual (and a fluffy rabbit) for anyone who is ready to start letting go. It helps to put a bit of a full stop on things.

My next mission is to start getting my energy back and do something for a Brain Injury charity. I’ll let you know when I think of it. I also want to retrain as a Grief and Trauma Counsellor.

Finally (at last!) I just want to say a massive

to everyone who has been there with real and virtual support. Special mention to Diana who has been there through the very dark times and advised, supported and reassured me whenever I needed it (even though she is in San Francisco). Also my family who despite being over the Irish Sea and the Atlantic (Coppard family!) have given me the space and time I’ve needed to find my feet, space to be sad and gently encourage me to look for Lauren again.

And obviously Mr Braingirl, Ian, without whom I simply would not have survived.

I have had the most tiring, emotional crazy October and its time to write about it. I need to make sense of it and unload it before the inevitable slump.

On September 30th I was rushed to hospital, I was at derby training with Belfast roller derby, my new team who I’m trying to impress. I went in for a hit that didn’t feel right and the next thing I knew I woke up 4 days later in hospital.

It would seem I had a bleed on the brain and collapsed at training. If it wasnt for the quick thinking of my amazing team mates I probably wouldn’t be here to write this. That’s a scary thought, a thought I can’t process because even though it happened to me, I didn’t witness it. I was unconcious for all of it, so its a bit of an abstract concept to me. The people who really went through it were my loved ones- my team mates, friends, family and partner. They are the ones who saw me collapse and thought I had died in their arms, they’re the ones who visited me whilst I was sedated in hospital and saw my head completely covered in blood and plastic tubes.The people who got on a plane to come and see their poorly sister/daughter. They’re the ones who thought they had lost someone from their lives. That’s bloody scary right?

They’re the ones who have to help me cross the road because my eyes got messed up (temporarily I hope). I’m lucky really, I could be altered beyond recognition, I could have lost brain function, heck, I could be dead.

The hospital removed half my head, relieved the pressure and sewed me back up again

I have no recollection of any of this, all I know is I lost some of October. I do have some moments of fear when I get a raging headache and think its happening again, I get frustrated because I cant do very much at the moment, my wonky vision makes cars and walls jump out at me. I am naturally independent so you can imagine having to lean on people makes me very uncomforable and awkward. I usually like to be the support. I had a panic attack yesterday, my first one in years. The stress and worry finally got to me and needless to say I cried like a baby and telephoned Ian. Ian who has been so kind and patient and loving. I hate the fact that this has put his life on hold too. I know I couldn’t have prevented it but I still feel so guilty. I am still nowhere near ready to have a full and active day, I get knackered so quickly. My brain feels ready to tackle things but my body just needs to recover. I’m also feeling really ugly and unconfident, I lost half my hair and my left eye has a mind of its own. I wear glasses now with a patch over the left eye until it settles back. I feel disgusting.

This then makes me think about my future in skating, let me get this straight, I LOVE skating, it has saved me many times and initially in the first couple of days after waking I was ready to give it all up. But there’s a part of me that still needs it. The thought of not being part of the skating action fills me with great sadness. I have played roller derby for 4 years now, whilst this isn’t a massive amount of time, in UK derby terms it’s kind of bordering on veteran. I was beginning to doubt my own skills recently and feel that I have hit a slump in terms of my skating. I was questioning my ability and my commitment.

I don’t want this to stop me, it’s just a temporary blip. There are some days when the blip seems insurmountable though and I lose hope and faith in myself. On those days I curl up and cry and hate the world and myself and my wonky brain but I have to keep going, I have to fight. Sometimes fighting is hard, sometimes its easy but I’m so glad I’m not doing it alone.

Let’s hope the end of the year brings good things, good recovery and good cheer. I also need to focus on finding a job. Ha! lets see who’ll employ a reject from Mad Max with a roving left eye.

But seriously, this is a thanks to all who were there, all who saved me and continue to do so. The unflinching support and love is invaluable and even though I don’t show it, it means the world to me. You certainly find out who your friends are in times such as this, so to those friends who haven’t even bothered asking how I am, I hope you have good lives but I think our paths may end here. To everyone else who doesn’t know me, thanks for reading my babble.